Can I ask about aspergers - worried

[GooseyLoosey]

Seen a similar thread but did not want to butt in, so hope you'll forgive me asking something similar.

Ds is just coming up to his 5th birthday. He is without doubt a bright child. He can read and write slightly above the age norm but can also explain gravity and global warming to you. He is very articulate.

Problem is with social interaction - and I have been concerned about this for years. He just does not know how to get on with other children. He buts into games in inappropriate ways, has a very literal interpretaion of rules and is incensed by any transgression of them, can be agressive when he perceives unfairness and has difficulties in understanding how other children feel.

By way of example, was at a birthday party yesteday (ds gets invited to very few . Everyone ignored ds and he did not know what to do. He was confused when the party games were explained and just sat there (he said the noise was too loud and he could not focus). Later, they were told to form a train and not to break it. Ds got hold of a boy who did not want ds to hold him and told him to let go, ds however was focused on the "don't break it" bit and would not. It ended up in a brawl on the floor (as I was sprinting over).

These are all very vague things and I don't know if I am worrying about nothing, but it is breaking my heart to see ds being left out of everything by his peers and ignored in the playground.

If you have got to the end of this, thankyou so much and I just wondered if this sounded familiar to anyone out there?

There are a few other routes you could take, is you HV any good?.

School and the school nurse can refer you but like tiggiwinkle said schools are often useless with carrying thing through like this.

Have the school have an educational Pysc in to see your son at school, although an ed psyc cannot Dx an ASD they will often give school good advice on how best to help a pupil, and i believe that they can also refer to a child development clinic.

Thanks twocutedarlings. Nothing has so far been done but there is a parents evening tomorrow so I am considering mentioning the possibility then. Dh is vehemently opposed to this as I don't think he want to acknowledge that there is a problem at all but I am not sure that this is in ds's best interests as irrespective of the label, there is an issue.

The HV is not bad but have not seen her for years. As ds is nearly 5 would she still be interested in him?

Certainly worth mentioning it at Parents evening-they may already have concerns themselves. School can make a referral to the CDC so if you do not feel your GP will be sympathetic it is worth asking.
Your GP should be willing to listen though-perhaps if you write a list of your concerns when you go? Is there a another GP in the practice you could go to if you are not happy with your own?
By the way, Dads are often not willing to face this until some way down the line-even if, or perhaps especially if, they show traits themselves!

Thanks tiggiwinkle. You are right about dh's reluctance possibly stemming from his own social skills or lack thereof. He describes the people at work and the way he interprets their actions. I then reinterpret them for him in a more normal way and he then proceeds on the basis of my interpretation. I think he may never see that there is an issue with ds as that might mean acknowledging something about himself. I talked to him at length about it last night and he said he would need more evidence before doing anything. I am not sure exactly what he wants, I see ds in social situations often and he is always isolated. I talk to the teacher at least weekly and she thinks that there are problems. It is clear that the other children do not invite him round to their houses or to their parties.

Can I ask one more question for those of you with children who have AS. It is ds's birthday in a few weeks and he clearly wants/expects to have a party. I know at a conventional party he will feel isolated and alone. I had thought of having it at home and getting an entertainer who will make ds the centre of attention and clearly explaining any games to him beforehand so he is not confused and can join in. In your experiences would this work (assuming of course that anyone will come )?

Goosey - haven't got to the party stage yet so no advice. But just big hugs - it brings it all into focus at these sorts of occasions

An entertainer sounds like a fab idea, so long as its well structured.

Where about are you goosey, im just wondering if us MNers could help you out with some playdates.

I basically decided on behalf of my ds that a party was too much - he goes to the odd one, but is happiest on the perimeter if you know what I mean. So I said as we'd go to a theme park for the day with another family that we know well - took a cake with us - and we had a little close family tea party at home too. I did give him the choice, but steered him towards the day out iyswim. If you do go for a party being at home sounds good and I would invite all your friend's children - it means they will turn up! Could you do the games/ craft/ bouncy castl in the garden yourself - so you can rehearse it all with him?

I know it's excruciating inviting children to tea and having them refuse - I invite the mum too and explain about ds's dx, but his younger siblings do help things along.
Your health visitor is his up to 5 and mine did my referral to a paed (only severe cases go to the child centre in my area) - so we sidestepped the gp entirely.

Parties are always a difficult one Goosey-the entertainer idea sounds like a good one!
I had a couple of parties for DS5 at the local soft play. Now he is a bit older (he is 9) I tend to just have one or two friends and take them out bowling or for a day out-something like that. DS seems to cope with this better. We are lucky in that there are several very similar boys in his class and they get on very well!

By the way, as far as your DH is concerned, perhaps if you leave some literature-(eg the Tony Attwood book)-around he may read it when you are not looking and it may get him thinking?

Will go with the entertainer then. Now just have to decide who to invite - the children he says are his "friends" vary on a weekly basis depending on who has been nice to him that week and this weeks best friend is someone he does not like at all next week (on the basis of very minor action on their part). He has also vetoed some of my friends' children and if I invite them, not sure what his reaction would be (to be fair, one seems to hit him on a fairly frequent basis).

Will get the book and see what dh thinks.

Thanks all for listening as I realise that my problems are very trivial compared to what many go through.

My son had a magician for his birthday. The only thing I'd say is that whether it works depends on your son's personality - my ds hates being the centre of attention, so looked like a frightened rabbit when the magician asked him to come up and help him with some magic! He was very brave and did it, but I should have said in advance maybe not to do anything too public with my ds, but to keep it low key. I assume your son doesn't have this problem, if you actively want him to be made the centre of attention. Oh, and as with every party he's ever been to, after about an hour and a half he started asking when he could go home, so I would recommend making it quite a structured and relatively short party! And stick to simple party games, as other children besides your son don't like to get confused. Musical bumps is a nice easy one to understand (and no chairs, cushions or other equipment involved).

I still have no idea how much, if at all, my ds enjoyed his party, as he has always been so eager to please he claims to like everyone (despite never wanting to play with anyone other than his brother) and enjoy everything. The only obvious success I've ever had around birthdays and birthday presents was getting him a watch this year - it's the first time I've ever seen true delight on his face when he opened a present.

Thanks Hels - he does like being the centre of attention and cannot imagine him having stage fright. I am slightly worried that if the others heckle in some childish 5 year old way that ds will react aggressively. Also as ds is very excited, I am worried sick that no one will come.

I think I need to talk to the magician in advance about ds's personality, in particular how party games work. I know it will go better if I am in the room, but not sure I can bear watching. I know that is cowardly and of course I will do it, but am dreading it, really am.

Goosey - if you had a party at a soft play, the only organises bit would be the meal, the rest is just free play. Would that be any easier for your ds? Seems like party games etc. might be a lot for him to manage (and you and every other mum who has parties at home!!!)

Its a good idea Nikos but soft play at parties does not really work for him. He tries to join in, but after about 10 mins comes and sits with me. I want something where he will not have to try too hard to integrate but will still be the centre of attention and not feel excluded.

One thing that is recommended for children with AS is to show them things visually. So you would have a picture of a party and all the things that are going to happen e.g. magician, present giving, food, any games and have it as a story board for ds. If he gets anxious before or during the party, he has his board that he can look at to reassure him.
It was described to me as : imagine you were going into hospital for an operation. you get a letter from hospital to say what will happen, directions, what to bring. Then if you get anxious, you can go and look at the info again and feel reassured that you know what is going to happen.
Might be worth a try. I soo want your ds to have a good time and for his friends to come. Could some of us be on standby with our dc as extras

Hi im sort of in the same situation as you my ds is 3.5 and is at nursery he has no idea how to fit into the social scene. His teachers have raised concerns with me and have said it may be worth getting a referal from our gp. I am finding this bit hrd to deal with as I can see there point of view but other times he can be so normal. He dosent know how to interact with others he goes pretty wild at parties and usually ends up scraping with someone. He is the odd one out at school and my stomach is always churning when we are waiting to go in, in a morning. I feel so sorry for him as he is such a bright little boy but he has his quirks and they dont seem to be improving. My dh has always brushed it under the carpet however he did say last night that he thought aroung age 4 and a half childrens behaviour should be getting better and that when he gets to that age if things havent improved maybe we should consider there may be something wrong. I think thats his way of saying that he thinks ds is a bit different to others. My ds has no road sense when we go to school I make him wear a wrist strap in case he darts off. I feel like you do and its breaking my heart

Actually, when I say I've always thought my son is on the autistic spectrum, that isn't true any longer. In the last two or three months, there are so many things about his behaviour that have improved that I'm really not sure any more. What is left behind are characteristics that are often found alongside aspergers (eg hypotonia, mild motor planning issues but NOT clumsiness, as he is fine once he's been taught how to do something, and mild physical tics) but are not part of the diagnosis. He now comes across more as a child who can be quite obsessional, but who is socially aware that playing out his obsessions is not always appropriate (eg he does't at pre-school, in front of my friends or guests, etc) and that even if it is frustrating to have your counting, storytelling or singing interrupted, particularly if it makes you forget where you'd got up to, it is not acceptable to get colossally upset about it (so he doesn't, although he does have to tell me how good he was not to get upset!!!). He also, these days, has a wonderful imagination (he no longer sticks to things he's memorised or seen before), he's always had a lovely voice with plenty of expression and no oddities of speech that I've noticed, he loves cuddles and is affectionate, copes well with changes of routine and loves travelling, and plays like a completely NT child with his younger brother (who seems to have really helped him behave more normally!!!). He does have an unusually good memory and likes to memorise television programmes and books word for word, knows what number on the CD each of his nursery rhymes is, what number a letter of the alphabet is (eg a=1, u=21), invests too much importance in numbers generally and other peculiar things, but again, you don't have to be autistic to enjoy doing that, albeit you have to be a bit on the unusual side... As for his lack of interest in other children, from a few things he's said recently, I think a large part of that is anxiety in approaching other children (possibly partly because a legacy of his hypotonia is that he is not physically confident, so afraid of being pushed over or having to join in running games where he can't keep up), rather than a genuine lack of interest. He used to be the same with adults - it took him a year to talk to his pre-school teachers, but now he'll happily chat to them. So I think it would be unfair of me to assume he will always hold back and not want to join in, or know how to join in, with the other kids. And I've seen him watching the naughty boys with a smile on his face, appreciating their games from a distance. Also, he sleeps well, eats well, has no attention problems whatsoever and doesn't seem to have any sensory sensitivities, which would make me a very lucky mother of a child with AS.

I now think he is neurologically unusual, which has skewed his development completely, but that he is fitting in more and more as time goes on, and that his pattern of "symptoms" no longer fits a specific diagnosis (unless he gets enough tics to be diagnosed with tourettes...). To have improved so much by the age of only 4, I just have serious doubts whether it would be fair to label him, yet - it might bring extra help, but I'm still no 100% certain what extra help he really needs. Am I being deluded, or do you agree that, whilst he may be exceptionally quirky, he doesn't quite fit the AS profile?

What is he like in his most stressful situation? For my son that would be when he is in a big social situation. Then his behaviour becomes more autistic like.
Otherwise, he plays normally with his siblings if somewhat aggressively at times, isn't bothered about change or routines, very affectionate and articulate, lots of expression in his voice and we have seen rapid improvement in lots of areas.
But I do still think at this stage he does need one to one support in preschool and I feel a diagnosis will get this in place.
If your ds has no need for extra support and school are happy with him, then you probably don't need a diagnosis. It's your call at the end of the day.
I can only echo what someone else said about dx being a really positive thing.

He's not too bad these days in any situation. I haven't been really embarrassed by his behaviour in a long time, although I've been in quite a few situations where I've been on tenterhooks in case he reacts the way he used to, but he's managed to keep his cool/not look too eccentric. His pre-school teachers think he's lovely.

Hels9 - your DS sounds alot like my DD.

She also numbers most things including CDs and the alphabet.

Take a look at this thread i posted here about my DD when she was a similar age to your DS.

www.mumsnet.com/Talk/1373/367585?ts=1207003068264

This will also be be really helpfull for anyone thats thinking of having an assessment for there DC as the advice i was given was excellant.

HTH

Just to also add, i cannot believe how much my DD has come along since then. Its amazeing to look back at.

At parents evening 2 weeks ago her teacher scored her at a 6 (out of 9) for her social skills .

Nikos, thanks for the offer, that's so nice! I have now become surprised when people offer to do nice things for ds so it was especially touching.

Spoke to magician yesterday and she agreed to come early so we can explain all the games to ds. She also said that she would explain to him if he was confused at any point, she was his magician so he should come and ask her - didn't matter what anyone else was doing as it was his party. Very nice woman. I will think of visual queues for him too.

He is at his worse in large social situations like parties as well. I have noticed that 1-1 he is largely OK. Not perfect but he is learning to adapt his behaviour to other children. He is also very confident with adults and always happy to approach them. However, in large groups of children, he can sit in absolute silence while a party goes on around him.

I am still dreading parents' evening tonight though! I know that his teacher will tell us that he has made improvements etc but all I see at home is ds becomming more unhappy at school as he tells us that people won't talk to him or play with him etc.

Hels, your son sounds lovely and quirky!

Twocutedarlings - thanks for link to other thread.

Laughalot, your post could have been mine. It is a truely horrible experience when you know how lovely and amazing they are and you just see them rejected by other children. Whenever I asked ds's nursery if there was a problem they always said he was popular and outgoing and yet at every gathering of any sort I ever saw, he was alone. I wish I had asked them more now.

Hi, twocutedarlings,

Yes, your dd does sound quite a lot like my son! Although he will sit down next to other children and even help them with jigsaw puzzles if he is specifically asked to by his teachers, so they've never raised any issues with me with regards to his social skills - they just see him as rather shy but eager to please and don't seem too concerned he still plays alongside rather than with the other children. Basically, he will do pretty much anything the teachers ask him, even if he hates doing it, so we've had no trouble getting him to write his name - although given the choice, he would live in his head all day, making up stories, singing, etc, rather than actually "doing" anything.

The only issues anyone has expressed to us so far re the transition to primary school are that he never asks to go to the toilet (will wait for it to be suggested to him, although he does sometimes say he needs the loo at home) and would probably hang around the same table all day if it weren't suggested to him that he try something else for a while - ie he likes to have a lot of adult input.

I think I might have to wait until he's started primary school before I take the issue of testing any further, as it will become obvious by then if his relations with other children are going to be a long term problem. At the moment, he has the security of a lot of teachers to a smaller number of children, so can get away with seeing the teachers as his friends and the other children as a necessary evil.

We already have a developmental paediatrician, physio and occupational therapist who see him for reviews on a regular basis (and recently came in to observe him at pre-school, so I await their report with interest), so I know that getting him seen will be easier for us than most people as he's already firmly in the system - his paed has already raised the possibility of aspergers in the past, based on the fact that he hates going to see her, so isn't very helpful when she's trying to examine him (we've been under her review since he was 15 months for his hypotonia and hypermobility). He doesn't have any issues with eye contact that I've ever seen, and his paed. also agrees his eye contact is fine.

How is your daugher doing now? Does she have extra social skills lessons, or other forms of extra help? Does she have friends at school?

GooseyLoosey - good luck with the parents' evening, tonight! I hope it goes well and the teachers are forthcoming and helpful. Let us know how it goes.

Hi Hels,

The start of school was a complete nightmare if im totally honest. It was extremley stressfull for all of us.

The main problem was that the school was just to busy (400 plus kids). However the school very quickly put in extra support for her and she did settle in. She is supported for about 80% of her day.

She has made some friends and will happily play with other children on a 1 to 1 basis (on her terms)her play is often inapropriate and she will often latch onto just one friend and totally overwhelms them. The children that she doesnt like she will openly tell them so , but we are working on this and she is getting there.

She is actually about to start at a new school after the easter holidays. I feel awfull for moving her as her current school have worked really hard to help her. But a place has become available at a school is much smaller and has an intergrated resorce for for ASD, so they are very experianced.

It was an awfull decision to make but in the end i decided that long term wise her new school will be a better enviroment for her.

At her old school she was the only child with complexed SEN. At her new school she will be one of many.

When does you DS start school hels ?